Exploring the emotional impact and adjustment in frontotemporal dementia family carers

Behavioural variant frontotemporal dementia (bv-FTD) is a rare form of the condition which manifests in personality and behavioural changes. Literature has indicated that this is a particularly challenging condition for family carers. Research has begun to explore the qualitative experiences of this group of carers, but is limited to date. The current study aimed to further explore these experiences with an emphasis on how these carers learn to adjust and accept their situation. Grounded theory methodology was adopted to analyse semi-structured interviews with 12 spousal carers (2 were male). A theoretical model is proposed to describe the carer journey and cyclical adjustment process within the progressive context of bv-FTD. This model implies that early stages in the process, including pre-investigation, as well as a number of mediating factors, including the carer’s own past experiences, influence the adjustment process. There is a continuous cycle of adjustment for these carers. These findings add to the existing research base by considering different stages of the adjustment process and linking themes together for a better understanding of the experiences.